Tag Archives: CHANGE

The Broken Glasses

22 Oct

I am always navigating through a crazy maze of trials in my life. Always trying to figure out if the “what is” now is “what it’s supposed to be.”  I constantly examine this concept with myself and especially my children.

Last Tuesday was an especially difficult day. I struggled through the day and my kids weren’t even home from school yet. Once my little ones arrived home things went from hard to climbing Mt. Everest. Blaise my sweet boy who has Prader Willi Syndrome and Autism was in a state of destruction. As dinner approached I asked my sweet angel where his glasses where. Very nonchalantly he responded that they are broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses, broken, twisted and shattered in little pieces. I found myself cracking into those little pieces too. I lost my patience and started yelling, I hate that part of me that comes out when my soul cracks.

I screamed at him, “Why, Why, Why?”

He never answered, he didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue, they are at the surface, they are the like the skin, they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be normal? Why doesn’t my sons brain work?

There it is the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive, tough but working. In reality it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself, I cried for the stress that his syndrome can create in me, but mostly I cried for him. I cried for what I thought was missing. I was quiet after I let it all out, I was quiet all through the days that followed. Something had opened up and I had to finally face it and deal.

I had to accept what is.

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Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failures or “lack of’s” in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my ah ha moment that I can accept what is now and trust that things may look different in the future. I have to let go of what I think it is “supposed” to look like in my life, and my kids lives.

As the parent of a special needs child I tend to be on a roller coaster of emotions daily. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgement to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

Everyday Like Today

28 May

I wish everyday was like today, period!!!

It was a perfect day. I got to spend the entire day outside with my kids and watch them swim in the mini pool. I watched my husband cook on the grill (yay for me no cooking at all), I had some wonderful conversations with my in-laws and I got to enjoy a beautiful glass of Pinot noir. Dare I ask what more could there be? Well okay, if my sister and mom and dad were here it would have been the most PERFECT of days, close enough though.

My in-laws bought a mini pool, it is big enough for me to swim in, the water is about 3 feet deep. I found myself just floating and staring up at the sky. I watched the most beautiful clouds swirl above my head, and I was so relaxed. I thought, “why can’t everyday be like today?” So much peace, no fighting, everybody doing their own thing but feeling very connected, and so much life all around us. I floated in the pool like that for quite some time, listening to the silence, or how all the sounds seem so much slower and quieter. I felt my body as it appeared to weigh almost nothing, all the heaviness just drifted away. I wasn’t worried about how I looked in my bathing suit, or did I remember to pay this bill, or do that thing, all I thought about was just drifting slowly and enjoying the moment as I relished the quiet outside and inside.

It was wonderful eating a great meal and watching my kids play and play and laugh all day long. I felt no pressure or stress. My entire family felt very relaxed and at ease. This is why I wish everyday was like today.

I spoke to my sister on the phone today and I told her that I finally cemented in my mind what SUCCESS is to me. To me success is peace. Of course there is a small idea of money in there, but it really is only to the point; where there is no stress to pay a bill or provide for my children. I truly define success as peacefulness in my life. Freedom from constant arguing, complaining, worrying about money, and let’s not forget the forever screaming. Success to me means having a job that I truly love and working is a “get to” not a “have to.” I will be successful when I get paid to do what I love and my family is functioning harmoniously. This is the definition I have finally come to claim in my mind.

Today felt very much like what I see in my head. Everybody was calm, happy, living in the present moment and enjoying all the blessings that life has bestowed upon us.

I feel extremely grateful to be alive today. I am still on an incredible journey of self-awareness and learning to live my best life, and I am so enjoying every moment of it.

We are Special

26 May

I received a message yesterday from my sister to call her right away. I was physically and emotionally exhausted but I called. As I listened to her on the other end of the line say, “My friend has a friend with a 5 week old baby just diagnosed with Prader Willi Syndrome, can you call her please?” Normally I would have hung up  the phone and called her straight away, however I live by the new principle of I CAN’T GIVE TO YOU WHAT I DON’T HAVE!  So I told my sister to give me 2 hours and that I would call her. I did call and left a message. Blaise then called her a few times too, haha!

We finally connected this morning and it was beautiful. It felt really amazing and interesting to be the one comforting. I sat and thought to myself what would I want to hear if my child was newly diagnosed? What would I say to me 3 years ago? What are the most important things to really get across?

So I started with the most obvious. Please allow yourself time to grieve. There is a grieving process and we often overlook it and the role it plays in the healing process. Then it was the obvious things to be HONEST. Here is the truth my son is amazing, Prader Willi Syndrome sucks but we are a pretty normal family, living a pretty normal life. I also found myself saying something that nobody said to me in those first few days. It makes such sense to me. FIND WHAT WORKS FOR YOUR FAMILY AND DO THAT! As long as your child is healthy, their labs are good and they are growing then you just do what you need to do to make your family work. I love how natural that felt. I love how it releases you from so much guilt over doing things the “right” way or the “wrong” way.

I shared honestly with this beautiful woman that there will be down days, but there will be so many up days. So many days filled with joyl

The most important things I found myself saying to her was very real and true to my heart. I told her the following:

AS THE PARENT OF A CHILD WITH SPECIAL NEEDS YOU LEARN TO APPRECIATE EVERYTHING even the smallest things mean so much. This not only applies to your child with special needs, but all your children. You take nothing for granted and learn to see the beauty in all the things that your kids do.

It all felt so natural coming out of my mouth,it all felt so real. When my sweet angel was diagnosed I was blessed to talk with 2 amazing people in that first day who have family with PWS. It was a life saver for me, it was my life raft because I was drowning in sadness.

Now I tell you this: 3 years later PWS is just a part of my life, it is my “normal.” I LOVE MY SON WITH EVERY OUNCE OF MY BEING. I don’t sit around and wish he didn’t have PWS I don’t him any other way. He is blossoming into such an amazing young man, and he and his brother are growing up to such amazing young men. I am blessed. My child says please and thank you, he tells me he loves me, and he smiles all day long. I don’t care what that genetic test says, he is perfect in my eyes.

Yes, I have my Broken Heart Syndrome moments, but they are getting less and less these days. As I am on my spiritual journey and deepening my love for myself and practicing loving myself, it is easier to accept all others around me. I love my child just the way he is PWS, Autism and all the rest of the wacky things that his body decided to give him.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Be grateful for everything. Even if it seems like a terrible tragedy or a terrible loss, it may really be a glorious blessing.

Angels in Heaven

22 May

I have convinced myself that every time somebody I love passes they become angels. I created this idea in my head at the ripe old age of 5, after the passing of my beloved father. I not only believed he was my angel but I believed that he was the brightest star in the sky at night. There have been hundreds of nights over the last almost 30 years where I have looked up at night, seen that star and thought to myself, “hi dad, I miss you and thanks for looking out for me.”

The thought sounds nice right, it is just one way I chose to learn to deal with grief. When my beloved Gunner, our first dog, was laid to rest I told my children now they had another angel in heaven looking down on them. This they understand and once again I find comfort in knowing I have a whole bunch of amazing people on my side, up there.

All that being said it brings little comfort as the news comes of another Prader Willi Syndrome child who lost their life from the syndrome. Dear sweet Lexus, who I never met, but none the less feel a connection with. Only 17 years old and a week before graduation Lexus has made her way to heaven. I know that she will be another angel looking down and protecting us, but it still doesn’t feel fair.

My heart aches for her family, she was the first thing I thought of this morning as I opened my eyes. She was the last thing I thought of last night as I closed my eyes. It is a very real wake up call to all PWS families. Not only is the thought of losing a child beyond terrifying, but our kids have PWS, it could be one of our kids next. That hits really close to home.

I had an incident this week with Blaise ingesting medication, even with the child safety lock on he managed to get the lid off and drink the bottle. My heart stopped and it hit me like a sledge hammer to the head. My child could DIE because he is so hungry he would drink medicine because it tastes good.

I don’t want to sit here and slam PWS and say how much I hate it and what it does to all those who suffer from it, that is a given. I want to say this. WE MUST FIND A CURE, A TREATMENT, A PLAN OF ACTION TO SAVE OUR KIDS. I am committed in every way that I can be to letting Blaise reach his full potential and live a long and full life. I want this for all kids and adults with PWS. They all deserve a chance.

The thought of this syndrome taking my son’s life is beyond my realm of thought. I will never give up the hope of a better future for him.

If there ever was a cause that needed your support I believe it is helping to find a cure for PWS. How can we do this? We can through research. Please consider taking the time to learn more and even consider making a small donation.

please visit

www.fpwr.org

www.pwsausa.org

I am hosting a One Small Step walk here in Georgia for my son Blaise.

Come and join us and help us find a cure.

Open Those Hips

21 May

I can’t believe I am actually halfway through yoga teacher training.

I can’t believe how it has turned out to be nothing that I expected, and everything that I dreamed for.

This journey is such a powerful one. There is much work to be done, and I am happy to be getting busy doing it.

I will not reveal all the intimacies of my individual teacher training, but I will say that it has been a sublime experience. I am most definitely not the same woman I was when it all began. This past weekend in particular really stirred up the pot within me. So here I am on this Monday afternoon and I am experiencing a whole host of emotions and physically altered. I spent the vast majority of my weekend and the week prior working on “OPENING THOSE HIPS.”

It has been said that hip openers are big on releasing emotions. I have been slowly getting rid of so much stuff, but this weekend was like I cleared out the house and had  a major estate sale on pent-up feelings and junk.

I have physically never felt so open in my hips before. It is a liberating feeling. I am walking differently and feel much more centered. I love the evolution. I love watching myself from the outside as I shift and change and become the woman I see in my dreams.

I am an anxious person, and having 2 very demanding children has left me feeling frazzled and depleted on more and more days lately. Everybody under the sun told me to start meditating. Well, for some that might be an easy task, not for me. I am the person who just can’t shut the brain off, I can’t cease the conversation in my head, not even in my sleep. That is until last week. YES!!! I was finally taught to meditate, and to my chagrin I could actually accomplish a meditation. I felt like I had climbed Mt. Everest. I can only say. I have been meditating for a little over a week and the changes within myself are very noticeable and pleasing.

I am here at the table and a storm is brewing outside and inside, literally. I am unshaken. Maddock is screaming and yelling and hitting and I am a rock, impenetrable. I no longer have that feeling that I am going to explode and burst into a million little pieces. I feel like those old school clown toys that you used to punch and bounced right back up. Not that I am a doormat, but I can take a lickin’ and keep on ticking. I can’t wait to see where this journey leads me, just how far I can go with myself, to discover my true divine self.

I have spent a considerable amount of time lately frustrated with people who are uncomfortable with the fact that I am changing. So I made a choice as to how I would let this affect me. I chose to send them love. They are either scared of what they don’t know or understand, or scared that I am going to leave to go off in search of some higher spiritual enlightenment. In reality I am on a spiritual journey, but it is all in an effort to be a better human while I am on this planet. I am in awe of the possibilities that exist when I the best version of myself. What careers are out there for me? What new friends are awaiting me? What new journey is there waiting to be taken? I am full of joy at the possibility of clearing out the old to make room for all the new. It is totally awesome, for lack of a better word. Yes, there are plenty of “not so awesome” days to get through to the good stuff, but I am grateful for it all. I am grateful for all the experiences that come my way because I am here to experience them. I realize that I am only 4 years younger than my amazing dad was when his body left this earth. I am committed to filling my life and my heart with as much love and life as possible. I want to pass on to my children to fully live their lives with integrity, joy, happiness and fun. I think the best way to accomplish this goal is to lead by example so here I am.

I am welcoming a career that I love that will provide for my family. I am welcoming having children who know what it means to truly love who you are, as you are. I welcome the opportunity to live a life where work is a choice and not a “have to.” I welcome waking up every morning and being excited to start the day, even if that day is filled with the not fun stuff in life. I welcome being completely able to change and shift and grow until the day my human self leaves this earth.

They don’t call it a yoga practice for nothing, or a meditation practice or the like. This stuff takes work, commitment to yourself and those around you. I see the bigger picture. I see the end. I see how I have already made my life richer and fuller just by learning to live to be my authentic self. Scared, inspired, liberated, nervous, and hopeful. That is all me, oh there is so much more, but for the sake of not writing novel I will leave the rest to the imagination.

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